Longer Update

For those of you that haven't been bored by medical details in a while, here's a longer update for you......it might also cure insomnia if you read it late at night.

Ventilation: Andrew has continued to surprise the doctors with how quickly he got back to minimal ventilator settings and how well he's done on all of his blood gases in recent weeks. They've increased his sprinting time to an hour and a half each time, meaning he's breathing on his own for six hours per day. Though this isn't exactly the same as breathing off the vent, because he's being provided with pressurized breaths each time he tries to inhale, it does mean that the ventilator isn't triggering any of them....he's apparently gotten the hang of the mechanics. The next hurdle is getting the tube out of his throat. We have to hope that he doesn't need the "positive pressure" provided by the vent in order to keep his airways open. Natural breathing relies on "negative pressure," and could collapse his airway if it's not strong enough.

Food: It seems that we may have found Andrew's limits for food volumes, at least until we fix his reflux issues. In the last two weeks, every time his feeding volume has gotten around 10cc per hour, he's started to spit up. They want to minimize this process, as there is a danger of it getting into his lungs and causing problems. His feeds have seesawed up and down....going well until 10cc, then causing spit-ups, then being lowered to more manageable levels. In recent days, the nutritionists have evaluated him in order to make recommendations for possible low-tech solutions. I believe they'll probably end up fortifying his feeds with some solids, either rice powder or some cereal mixture. These will provide additional calories without increasing the volume significantly...that may enable them to feed less while retraining the same nutrition. They're also still trying to increase his volumes when possible....over the last two days, they've gone up 1cc every twelve hours. He's currently at 12cc per hour and hasn't spit up, but it may just be a matter of time. Even if he doesn't, it's a long way to "full" feeds (around 23cc), and he will definitely need the stomach valve surgery (Nissen fundoplication) in order to solve the problem long-term. They're talking to the surgeons now about scheduling, but it could be as soon as in the next two weeks.

PT: Andrew has so far responded well to physical and occupational therapy....he's also getting stronger on his own, and he moves a little more every time we show up. Yesterday he sat in his chair for a while and seemed to enjoy it. He was also moving his legs significantly for the first time in almost two months. He's wearing splints on his wrists to keep his hands in a healthy posture....they've started a "three hours, three hours off" schedule to give him a break. They're also doing regular exercises to build up his muscles and retain range of motion.

Meds: Andrew is still on quite a bit of medication, but he's also been able to wean on some of them. He's currently on four antibiotics/antifungals to deal with the infection he had last week....they seem to be doing the job. He's also still getting regular doses of Ativan and Methadone to keep him calm, relaxed, and pain-free. They are slowly lowering his steroid doses by 1 unit every three days, and he hasn't had any noticeable respiratory reaction to the decrease. He's on Lasix to help him rid himself of excess fluid, Viagra and inhaled nitric oxide to help with pulmonary hypertension, and I'm sure there are a few others I'm forgetting at the moment. That's all in addition to the nutrition he's getting, both by IV and by stomach tube. He's got a lot of tubes and IV drips, and I'm sure the doctors hoped to decrease them significantly by this point, but he's definitely a fighter and his recent progress has been almost all positive.

The Plan: The doctors still want to take it slow as far as pushing him toward extubation. He's been doing well, so they'll continue to increase sprint times. Last night he went an hour and 45 minutes, mostly because he was sleeping peacefully and they didn't want to disturb him. As they increase his sprinting times, his "accessory muscles" for breathing should be getting stronger. That said, even sprinting for 24 hours a day wouldn't be a guarantee of successful extubation....as I mentioned above, the difference between positive pressure and negative pressure is an anatomical distinction that can only be tested by removal of the artificial airway (breathing tube). The earliest they would want to try would be a week or two from now, and we will definitely make sure they are better prepared from a mechanical perspective. We want to make sure that if he fails, it's not because of a problem with the ventilator, the air circuit, the prongs in his nose, or the position he's in.....it's all about optimizing his chances for success.

In the next week or two, we'll figure out the schedule for extubation and the stomach surgery. We don't really want to extubate him if he'll have to be reintubated soon after for surgery, but we also don't want to put him through the process of additional surgeries if he's never going to survive off the ventilator. It may come down to a combination of surgery schedules and his progress over the next week. We'll certainly keep you updated as decisions are made.